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i believe all sorts of banality can be very undermining, and really serves no purpose other than to insult the complexities in life of all those concerned. it is such complexity that enriches life when it is fully seen for whatever it is and then simplicity just flows on from there. what follows is a simple speech that i had to give to a group of peple who identify with being disabled and Samoan, and absolutely hated every minute of what i had to say. please keep in mind that it was for a very general audience and now roughly modified in this text form. (narcissism inclusive is still pretty wanting, but gives a bit more insight, and i think makes me sound even more thick, spoilt, and self-contradictory) : - |
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::::: If it was just insults and namecalling I was whinging about, I wouldn't blame people for not listening ::::: Some of this writing above sounds particularily juvenile and whiney to me now, but I guess it still stands as part of my background. My approaches to life still have much, if not all, of these bases. I just feel little need to express these continually to the extent reflected here. I can also see how this could hurt some people very dear to me if they read how I cannot subscribe to beliefs which they sometimes say make them who they are. To me, they are indeed much more than what is publically prescribed and sold to everyone including themselves. |
When my Uncle Solofa here invited me to come and give a talk to you all today, and to encourage some of you to get out and about more, i must say i cringed a bit. i wanted to come and see my uncle and aunty, but not having seen them for such a long time, i was a bit concerned that they would have been disappointed as to what i had done since we had last met.
to all the world, for the last few years, all it would seem is that i have been sitting in my room at my computer and having my parents look after me. at 32 yo, this is not where i once imagined i would have been. i know of, and have been very close to, some people and various agencies around auckland, who have set up services for people with disabilities like me. these agencies enable us to live on our own, help us at least initially to appoint and manage our own caregivers, and so we can go about doing the things usual for people our age ; work, study, some of my friends in wheelchairs are managing to raise their own families, run businesses, provide support services, some are in counselling, some lecture, teach, and generally lead very productive and busy lives. i've heard just recently, 2 friends of mine who had attended a special school with me down in wellington have now married - we thought they were the slow ones (!), one has travelled extensively several times across india and southeast asia on crutches, one with more extensive cerebral palsy than mine is now a senior computer software engineer for a firm in Las Vegas.
i got a degree - a bachelor of science majoring in zoology - way back in 1995. as someone wanting to research in the area of animal behaviour, ecology and evolution, this really is not much at all so far. i had always loved my studies, and as there were no science teachers or labs at special schools, it had been extremely important for me to do everything i could to get a normal education, and against a fair amount of hurdles, i ultimately excelled at high school and then on as an undergraduate at Auckland University, winning a number of awards and scholarships along the way. i loved the work and finding out about the world around me. evolutionary theory, basic genetics, finding out why animals behaved in the way they do and the philosophy concerning how we interpret such behaviour was what i really loved. i went out doing this thinking i had the full support of all my family behind me, that i was learning how to do my bit for the world around me. i thought i was showing that i cared and was immensely grateful for this life that i had been given.
i grew up and found out that a considerable few of my family had their own way of loving and supporting me. to some people, and increasingly more so today, university is an obstacle to get past, a way to get letters after your name. it ends in a party where your relations stick flowers around your neck, people you've hardly met - maybe once or twice before if you've been lucky - end up kissing you, suddenly calling you their cousin and twittering on about family pride and honour. i had to work extremely hard to try and appreciate all this, and i do. it has incredibly important meaning for some of us. but in my mind, there is no way in the world that i was doing what i did for pride and honour, i did it for a love of learning and finding out about the natural world around us. i know it's not like harvesting coconut from the plantation, or noticing what trees are fruiting by watching where the bats are going, but i have learnt some skills by which to monitor nature in a way that i can, and in some small way i hoped that one day i could make a contribution. that would have to probably end up being theoretical, if anything, since lab and fieldwork is out of the question for me.
it was very much an honour for me to end up studying for my masters degree with a professor who had been one of the major instigators behind the setting up of islands out here in the Hauraki Gulf of Auckland, upon which native species who aren't surviving on the mainland, can be transferred to. my masters thesis that i had started out so long ago is partly about rat eradication from some of these islands. people brought the rats to nz, and many native species cannot survive with these present. however, our environment has been so modified, we are unsure of the effects of additions and removals to the islands offshore.
after having been capped with my BSc, and seeing that many of my friends and family were apparently so proud of me, but were only around for show and had no interest or respect for what i was doing, i eventually got lost and despondent as well. i actually became a bit more than clinically depressed and the doctors had warned that i might have to stay on pretty heavy psychiatric medication all my life depending on what happened in the following five years. that was extremely scary for me as it was already very easy for people to assume that i couldn't cope with life and it is ok with those who knew me, but i worried over how i could ever assert myself again with those i did not know. i had got into this mental state too partly because before i had been working so hard, and in order to get things done, i had to come across as sounding so sure of myself. i had to stop and pay attention to my emotions and what i had got so wrong.
it had been drummed into me from my upbringing, and indeed those who taught me at varsity, that people and a reality beyond whatever i could get from books, is extremely important. i had to look seriously at what i could do for people, as i know i could do a great deal, and i know some could really question my apparent focus on animals. while still attempting to finish my masters degree, i tried broadening my life among friends, some from disabled groups, and during this time, i ended up as the pacific islands representative on the 2000 new zealand disability strategy - a govt document now used in guiding some legislation and public policy.
to some disability politicians and advocates, i owe a great debt of gratitude. even though the message does not always get across, i also try to live my own life that extends in gratitude on what has been done before me.
however, i find that a lot of those people in political disability groups are extremely angry about how they are not being treated well in some areas of life in society - angry at buses, angry at shopkeepers, angry at parents, angry at doctors. there is always unfairness and injustices in our society, and it is good to take a stance against these - sometimes it is extremely crucial, but i believe it could often be measured more against the expense of missing out on the life already in front of us. i can understand this anger, and have sometimes experienced it at such intensity myself when younger. for a long time there, i thought that maybe i should listen to these people and maybe i had been sheltered and spoilt and just did not realise that what i thought i had dealt with, i have to deal with again. but it struck me that there was so much anger, some could simply not enjoy the life they said they were fighting so hard for.
that anger comes out in personal relationships too and i find it ironic that many disabled people i know are crying out to be seen as capable of loving someone, when actually i think there really is a need to do this in order to recognize that just like with any other person, a person with a disability can exhibit behaviour which would be considered abusive if there was the intent behind it. this behaviour, intentional or not, whether both or one of the couple are disabled or not, can have ramifications for anyone. it should more often than not be worked through, rather than accepted, if only to move on with peace. i just think it can be debilitating for someone so keen to insist that they can manage in circumstances that in fact no one should be expected to endure. i'm certainly not saying that this always is the case - undue emphasis is not warranted here. nor will i ever say that in any event, two sides to every story don't each have depth. it's just that relationships happen with everybody - it's high time this should not be any suprise, but also due consideration to the pitfalls should be given. i don't think this can take place when in public, one feels the push to extol only the positives on the part of who people assume one represents, all the time.
i'm hoping that others can find that there is positive potential inherent as a matter of course in what i say here, once the negatives are blended into better context.
a lot of what i had been told by these groups to do - have a dream and be very goal orientated - cuts a lot out of life, i found, and doesn't allow one to listen, appreciate and integrate with other ways of seeing. that was my problem to begin with. having aims and goals is good, but only if these also remain grounded as part of the fuller picture to which these belong. i have worked extremely hard to learn how to not block or force my feelings, but to allow these to come-and-go, and only nurture the ones that can be acted on in a sustainable and healthy way. when i had clinical depression, i became afraid of feeling and thought that in no matter what i did, i would just get hurt. life felt worthless. what i feel i have now has put me in far better stead for the longer run and this is why i have felt hesitant about coming in today, because it is my belief now that getting people charged and pumped up on enthusiasm doesn't work nearly as long as encouraging people to develop their own knowledge of working with their own ups-and-downs. this developing does happen in practice, but the way the process is dressed-up and expounded in public leaves us short of a deeper appreciation for the intricacies and richness involved. Thus, i argue that a lot of meaning gets lost.
obviously, i can only speak for myself. if i could, i would appeal just to anyone in realising that no one should have to feel compelled into political grouping. i do understand, however, that this can feel like the most appropriate way. i wish different approaches could also be seen as contributing and complimentary.
lastly, i have found that some of my friends with disabilities are absolutely dying to be valued, respected and looked upon as leaders and upstanding citizens in society. indeed, this is what the strategy document that i worked upon wants. i however would encourage anyone in society not to bother with adhering to the norm at all. i'm sure we all know of people working so hard to get recognition, they ignore the really important things in life. basically my message to anyone, not just a disabled person, is to do something you love, and not care if anyone else notices. in turn, we must help others do the same even if it doesn't make complete sense to us. but when we can, we can listen to what a person does for what it means to them - that may be different to what it means to you, or to society as a whole. i think the study of nature had helped me to look outside of myself, and maybe this is more of what we all need - to get out of ourselves and our own little concerns. i think we can all be more productive if we stopped worrying about matching up to others.
mum has been with me all the way. dad too. our families need us, and it helped when i learnt that.
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Having it implied that
I could not love ...
(this gets tedious as one page of many on the same subject,
but great for those who just want a
succinct finalising summary without necessarily
reading the rest further on in my websites)
Excuse me for reiterating that some of this writing above sounds particularily juvenile and whiney to me now, but I guess it still stands as part of my background. My approaches to life still have much, if not all, of these bases. I just feel little need to express these continually to the extent reflected here. I can also see how this could hurt some people very dear to me if they read how I cannot subscribe to beliefs which they sometimes say make them who they are. To me, they are indeed much more than what is publically prescribed and sold to everyone including themselves.
Back to the start and beyond ...